Buckwirth shared an experience
Decision Point: It is time to start considering Hospice. Rather than gaining strength I seem to be growing weaker every day, and I can no longer make trips around the house. Even the short trip from my current guest room to the master bedroom leaves me panting and in pain.
This is not an easy decision, and I have not fully made it, but I can see that the day to make it is not that far off.
Buckwirth started following
Buckwirth shared an experience
Other Care (Multiple ): From the time I was diagnosed I believed my cancer was a little more benign than that of others whom I met and read about. Most who had a metastasis (stage IV) had it to the lungs or to the liver. They were often treated with surgery and always with chemo.
Mine? At diagnoses my metastasis was limited to a couple of lymph node clusters in my groin and stomach. Bothersome, but not fatal. I also breezed through my first 24 weeks of treatment, no one who saw me when the 5fu bag was removed would have had a clue that I had cancer, and even I felt almost as invincible as I had when I was well.
Then came the last few days of radiation, the pain of the primary tumor, the APR and the colostomy. Now I was different, and felt it everywhere I went.
Most of this seemed to be the treatment. The pain of the tumor could easily have been caused by the radiation. The surgery (which I was hoping to avoid) took months to recover from, and even then I had to deal with "the bag", a constant reminder that I was no longer a whole/well person.
After the surgery I took a break, maybe a bit long, but one I needed to get my head straight. Even traveled to Europe. When I returned I started a new biochemotherapy, not realizing that this may be my last defense. And my cancer? It was spreading, but contained in my lymph system, so I was going to be fine.
In November I had what would turn out to be my last session of biochemotherapy, and during the next two weeks the cancer was like a wildfire with a strong wind at its back. Spreading and growing very rapidly, but still just in the lymph system. Even though I was now actually sick, I felt that there was no way that I was in any immediate danger.
My doctors took me off treatment, explaining that I had gone through all my conventional options and all that was left were trials.
What was happening? My lymph nodes had had enough and were shutting down, or they were so clogged with tumors that they could no longer process the fluids they normally move through the body. My left leg swelled like a Macy's parade balloon, and looked like a sausage on the grill. Then there was the swelling of my scrotum, and the tightening of my skin on my torso.
Note that none of this was cancer, rather these were side effects of the disease, caused by the location of the metastasis.
As the swelling got worse it began to affect my organs. My left kidney stopped draining into my bladder, fluid was filling up the empty space between my lungs, a blood clot was forming behind my left knee... Left unchecked it was going to overwhelm all those organs that I was so pleased were cancer free. They may be cancer free, but the cancer was going to cause them to fail by proxy, letting the lymph fluid shut them down, one by one. This was rapidly becoming worse than any of the chemo side effects I had suffered.
This also affected my mood, my sense of humor was gone, and I did not want to talk to anyone. It was just too much effort. Along with that was the lack of appetite. I was eating so little that they were feeding me via IV, and there was talk of putting in a feeding tube to make sure I was getting proper nutrition. They inserted a picc line to augment my port, and hooked me up to a wireless heart monitor. Of course it still needed wires to attach to my chest, and they were careful to attach the leads to those areas with the most hair.
I was going to die, my organs drowned by my own immune system under the direction of the tumors that controlled it. My wife was told I had 30 days and she should put me in hospice. To her credit, she told them where they could put that recommendation.
I was saved by the proverbial second opinion. We sought a third oncologist at another cancer center (we had been going to Norris in Los Angeles, for the opinion we went to Moores in San Diego, both NCI comprehensive cancer centers) and he recommended a return to Folfox, basically a return to the chemo I first started with in 2010. My oncologist agreed, and after the second infusion I began to improve, after the third the improvement became dramatic.
Now, after two+ months in the hospital, I am home and in the wonderful care of my wife. I can walk a little, I have lost a total of 50 pounds of water weight (lymph fluid weight?) from my max of a few weeks ago, my appetite is back, and I can make all of the home health aides laugh. I can even joke around with the emergency services when I call to say "I've fallen and I can't get up" (happened once, but that is a tale for another time).
I now know what my timeline would have been had I chosen against treatment when I was diagnosed: I would not have seen Xmas 2010.
My toes are tingling, and my fingertips are beginning to get numb, which beats being ashes in a box. I may get a secondary cancer, or an organ could become overloaded by the chemicals and fail, but the only reason I will live long enough for any of those things to happen will be because I used the chemicals.
What I know is that I am glad to be here!